considering iViG treament (normal anti ttg iga but high gliadin antibody iga)

[KimMS]

Hello,

I was diagnosed with gluten ataxia and celiac about 18 months ago. I have been on a strict gluten-free diet (only gluten intake has been accidental). I don't have digestive symptoms but I have neurological symptoms. These have improved but not fully resolved (and might never). My doctor wants me to try IvIg treatments. I have read that before starting IvIg your antibodies should be in normal range. My recent lab results indicate my anti ttg iga is normal but my gliadin antibody iga is still high. What are your thoughts on IvIg for celiac/gluten ataxia? And is there a reason anti ttg iga has come down but gliadin antibody iga is still high? 

Here are my lab results:

Oct 2022

IgA: 142 mg/dL (normal = 69-309 mg/dL)

ANTI TTG IGA AB: 8.96 U/mL (normal = 0.00-3.99 U/mL)

Deamidated Gliadin Antibody IGA: 50.68 CU (normal = 0-19 CU)

 

June 2024

IgA: 150 mg/dL (normal = 69-309 mg/dL)

ANTI TTG IGA AB: 3.04 U/mL (normal = 0.00-3.99 U/mL)

Deamidated Gliadin Antibody IGA: 24.40 CU (normal = 0-19 CU)

[trents]

First, I have never head of IvIg treatments. What does this involve?

Second, I would investigate what besides celiac disease/gluten sensitivity can cause elevated DGP-IGA levels. It's always better to address the cause rather than to treat the symptoms if you can.

My guess is you are still getting some small gluten exposure consistently. I note that your DGP-IGA levels are dropping, as did your TTG-IGA levels. They just had further to go.

I would double down on your efforts to eat gluten free and then keep monitoring the labs before I would throw medications at it. Are you still eating out? It's the number one sabotager of the gluten free diet as you have no control over what happens back in the kitchen with regard to cross contamination. Are all your meds and supplements gluten-free?

 

[trents]

Are you taking any high potency vitamin and mineral supplements that would address neurological health such as B-complex, D3, and Magnesium glycinate or Magnesium citrate? I'm talking more than a multi-vitamin product here.

[KimMS]

Thanks for your reply. IvIg is Intravenous Immuno globulin (immunotherapy used often for autoimmune diseases). Longer story but in 2022 doctors realized that several neurological symptoms were due to the fact that I lost part of my cerebellum (showed up on MRI). So they ran lots of tests to figure out what was causing it. The only thing that showed up positive was gluten antibodies. I subsequently was diagnosed with celiac with intestinal biopsy. They also diagnosed gluten ataxia (autoimmune disease where immune response to gluten attacks cerebellum and results in ataxia - the cluster of neuro symptoms I had). I have shown marked improvement on gluten-free diet but they also want to try the immunotherapy to see if it could bring further improvement.

I have wondered if I have been exposed to gluten and not realized it. I don't eat out much and I do so exclusively at dedicated gluten-free places or extremely careful, trusted places. But I have eaten a few places in the past six months that were more questionable. In addition, I have read recently (on your site and other places) about issues with gfco certification, which had been a trusted label. So I now wonder if I have had gluten exposure and didn't realize it. (as mentioned, I don't have digestive symptoms, and there is often a delay in neurological symptoms, so it's not always easy to know if I've been exposed).

All meds, supplements are gluten-free. I take a multivitamin, magnesium glycinate, and riboflavin b2 (recommended by neuro for migraine prevention). Initially I was uber strict gluten-free (no eating out, only buying third party certified gluten-free or making all my own food). But my dietician/nutritionist (who also has celiac) urged me to expand my options b/c it is a quality of life issue to be too strict (and it was stressful). Also, my daughter was diagnosed w/ celiac after me, so I wanted to explore more options for her to not feel so restricted.

All to say, I did loosen up my restrictive diet a bit in the past 6 months, although I am still very cautious and do not knowingly eat gluten. I'm wondering if I need to tighten up again to see if I can get the anti gliadin count to come down some more. 

Any recommendations on how to approach gfco products or other third party certified products? I'm wondering if I can even trust those anymore...

[Scott Adams]

The most likely path for gluten contamination is eating outside your home, especially in restaurants. Certainly it is possible that contamination can creep into your diet from other places, but GFCO products are generally considered safe, and our article on their certification is aimed at improving their certification standards, rather than a call to stop trusting their certification. 

To test out your diet perhaps you could try to eat only whole foods for a couple of months and prepare everything yourself? 

For people with celiac disease hidden gluten in their diets is the main cause of elevated Tissue Transglutaminase IgA Antibodies (tTG-IgA), but there are other conditions, including cow's milk/casein intolerance, that can also cause this, and here is an article about the other possible causes:

 

 

[trents]

Frankly, we are all wondering if we can trust the labels "Gluten Free" and "GFCO" any longer. But they are currently our best options. Hopefully, there will be some stricter testing regulations put into place in the wake of recent revelations of laxity.

I'd still encourage you to add in a full-spectrum high potency B-complex product into your supplement mix. The B vitamins work in synergy and just supplementing one or two may not be helping much.

Maybe at this point you should trust your doctor and give the IVIG a try. Make sure you talk to him about your concern with starting this while having elevated DGP-IGA antibodies. 

[KimMS]

Thank you so much. This is very helpful!

[RMJ]

There isn’t much research on the use of IvIg for gluten ataxia, so it is fairly experimental at this point.

The reason for not starting until celiac antibody levels are normal is because the IvIg could change the results of the antibody tests, not that your antibodies would interfere with the IvIg effects.

If it were me I think I’d try to get my antibody levels normal to see how much that would help the ataxia, before trying IvIg.

[GardeningForHealth]

I agree with the other commenters; you are still getting gluten exposures in your diet.

[KimMS]

Thank you everyone for your responses. Quick clarifying question (if there is an answer for this!): If my gliadin antibody iga is positive but it has been trending down (rather than going down and then back up), does it necessarily mean I have had gluten exposure? Or could it mean that I haven't been on a gluten-free diet long enough to get it down to normal? Does that distinction make sense? I don't know how long it takes for the numbers to come down on gluten-free diet.

Also, why is one number (anti ttg iga) in normal range now but other number (gliadin antibody iga) is still positive? Is that typical that one would come down and the other stay positive?

 

 

 

[GardeningForHealth]

I just looked back at my own numbers, and I guess the anti-gliadin is a little more stubborn and takes longer to go down. My numbers here:

Eating gluten:

10 years ago: gliadin abs 21; ttG 28 

Gluten-free diet:

9 years ago: gliadin abs: 7, ttG 3

8 years ago: gliadin abs: 6, ttG 3

7 years ago: gliadin abs: 5, ttG <2

6 years ago: gliadin abs: 3, ttG <2

3 years ago: gliadin abs: 4, ttG <2

[RMJ]

My TTG IgA came down pretty quickly.  The DGP IgA took a while to become normal and took me getting more and more strict about my gluten free diet since I don’t get obvious symptoms from gluten. When eating processed foods I started with foods with no gluten ingredients, then went to foods that were labeled gluten free, then foods that were certified gluten free.

[knitty kitty]

6 hours ago, KimMS said:

several neurological symptoms were due to the fact that I lost part of my cerebellum (showed up on MRI).

Deficiency in Thiamine Vitamin B1 will show up on MRIs as white spots on the brain in certain areas including the cerebellum.  It's called Nonalcoholic Wernicke's Encephalopathy.

Thiamine is on of eight essential B vitamins.  To recover from deficient thiamine, high doses are required quickly so that the brain damage will not be permanent.  Yes, non alcoholic Wernicke's Encephalopathy can happen in Celiac Disease and is frequently overlooked and under recognized by medical professionals.  Get checked for nutritional deficiencies.  Vitamins and minerals are needed to calm the immune system, repair damaged tissues and function properly.

Because celiac disease causes malabsorption of all nutrients, supplementing with essential vitamins and minerals is important.  You'll need more than a one a day multivitamin.  

Magnetic resonance imaging in the assessment of brain involvement in alcoholic and nonalcoholic Wernicke’s encephalopathy

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5334504/

Edited August 12, 2024 by knitty kitty
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[KimMS]

Another question related to lowering antibody levels and gluten-free eating: What are thoughts about celiacs and shared kitchens? I and one of my children have celiac but the other two family members don't. We have removed all gluten flours from our kitchen, and we have separate toasters. Most of our meals are gluten-free, but the other two family members continue to eat things with gluten like bread, frozen waffles, cereals, mac and cheese. We have separate pans and utensils for cooking things with gluten (typically the only thing we cook with gluten is my daughter makes mac and cheese). Other gluten items are made in toaster or microwave.

I'm wondering if we are being careful enough regarding gluten exposure. E.g. if someone heats up something with gluten in the microwave or oven and then we heat up a gluten-free item right after, is there a risk of cross contact? Or is there a risk of airborne gluten from things like the powdered cheese packet used for mac and cheese (similar to flour)? 

This arrangement has seemed to work well for us and it was a good compromise when I went gluten-free so we didn't have to replace everything and my family could still eat some items with gluten (we were also told by doctors that my other child should *not* eat gluten free if she doesn't have celiac.) Now that I am reassessing my diet and all the potential places I could be getting gluten exposure, I am wondering if I need to rethink our arrangement.

 

[trents]

27 minutes ago, KimMS said:

Another question related to lowering antibody levels and gluten-free eating: What are thoughts about celiacs and shared kitchens? I and one of my children have celiac but the other two family members don't. We have removed all gluten flours from our kitchen, and we have separate toasters. Most of our meals are gluten-free, but the other two family members continue to eat things with gluten like bread, frozen waffles, cereals, mac and cheese. We have separate pans and utensils for cooking things with gluten (typically the only thing we cook with gluten is my daughter makes mac and cheese). Other gluten items are made in toaster or microwave.

I'm wondering if we are being careful enough regarding gluten exposure. E.g. if someone heats up something with gluten in the microwave or oven and then we heat up a gluten-free item right after, is there a risk of cross contact? Or is there a risk of airborne gluten from things like the powdered cheese packet used for mac and cheese (similar to flour)? 

This arrangement has seemed to work well for us and it was a good compromise when I went gluten-free so we didn't have to replace everything and my family could still eat some items with gluten (we were also told by doctors that my other child should *not* eat gluten free if she doesn't have celiac.) Now that I am reassessing my diet and all the potential places I could be getting gluten exposure, I am wondering if I need to rethink our arrangement.

 

You seem to be taking all the necessary precautions to avoid gluten in a shared kitchen situation. I wouldn't worry about airborne gluten unless you worked in a flour mill or a bakery.

[Soleihey]

On 8/12/2024 at 8:17 AM, KimMS said:

Hello,

I was diagnosed with gluten ataxia and celiac about 18 months ago. I have been on a strict gluten-free diet (only gluten intake has been accidental). I don't have digestive symptoms but I have neurological symptoms. These have improved but not fully resolved (and might never). My doctor wants me to try IvIg treatments. I have read that before starting IvIg your antibodies should be in normal range. My recent lab results indicate my anti ttg iga is normal but my gliadin antibody iga is still high. What are your thoughts on IvIg for celiac/gluten ataxia? And is there a reason anti ttg iga has come down but gliadin antibody iga is still high? 

Here are my lab results:

Oct 2022

IgA: 142 mg/dL (normal = 69-309 mg/dL)

ANTI TTG IGA AB: 8.96 U/mL (normal = 0.00-3.99 U/mL)

Deamidated Gliadin Antibody IGA: 50.68 CU (normal = 0-19 CU)

 

June 2024

IgA: 150 mg/dL (normal = 69-309 mg/dL)

ANTI TTG IGA AB: 3.04 U/mL (normal = 0.00-3.99 U/mL)

Deamidated Gliadin Antibody IGA: 24.40 CU (normal = 0-19 CU)

Did you end up getting the treatment and did it help?

[KimMS]

I'm sorry I have been inactive here for awhile - a lot going on! I started IVIg in Oct 2024 and because of a blip with insurance, I have only had seven cycles (interrupted with two months off). I tolerated the medication well (Octagam), but didn't see much improvement until the last cycle. My vision and ataxia symptoms were noticeably better afterwards. The plan is to continue monthly for 6-12 months to see if it helps over time. Unfortunately, I have had phlebitis in my veins after the treatment the past two times, so we are trying to figure out how I can continue to receive the infusions.

I am also working hard to be more strict with my gluten-free diet. As I mentioned in my original post, my AGA IgA antibodies have not come down (they came down but not all the way and have risen again). I have concluded it is probably from eating out ::sigh:: which is discouraging because I am very careful, but it seems I might not be able to eat out at all unless places are dedicated gluten-free.

Follow up question re: vitamins (esp. B vitamins). Should I get specific blood work to check each B vitamin? I have only had B12 checked, and it is actually high. I currently take magnesium citrate, D3, riboflavin B2 supplements (in addition to a multivitamin). Is there a multivitamin and B spectrum vitamin brand you recommend?

[Scott Adams]

Welcome back! It sounds like you’ve been navigating a lot, but it’s encouraging to hear that your last IVIg cycle brought some improvement in vision and ataxia—fingers crossed that continued treatment helps even more over time. The phlebitis must be frustrating, though; hopefully, your care team can find a solution (maybe a different IV site, slower infusion rate, or even a port if needed).

On the gluten front, I hear your discouragement about eating out. Even tiny exposures can keep antibody levels elevated, especially with celiac or severe gluten sensitivity. It might be worth trying a strict "home-only" phase for a few months to see if your AGA IgA drops further—then you’ll know for sure if restaurants are the culprit. (And yes, dedicated gluten-free spots are the safest bet!)

For vitamins: Since your B12 is high, testing other B vitamins (folate/B9, B6, thiamine/B1) could be helpful, as deficiencies in those are common with gluten-related issues and can worsen neurological symptoms. A comprehensive micronutrient panel (like SpectraCell or Genova’s NutrEval) might give deeper insight, but if insurance won’t cover it, targeting B1/B6/B9 tests is practical. For supplements, brands like Pure Encapsulations, Thorne, and Seeking Health are well-trusted for quality and purity (their B-complexes skip unnecessary additives). If you’re sensitive to synthetic forms, look for methylated B vitamins (e.g., methylfolate instead of folic acid). Your current regimen sounds thoughtful—just double-check that your multi doesn’t overlap excessively with your individual supplements!

[KimMS]

Thank you! This is great. I take Pure Encapsulations for my multi, magnesium, and Vit K (I forgot to mention I also take that). My doctors have prescribed all of the supplements for various things in addition to nutritional deficencies - migraines, low bone density). I will have them take a look at my multi vitamin though to make sure there isn't excessive overlap, and I will ask about getting tested for these other B vitamins.

Kim

[KimMS]

Quick follow up: with strict "home-only" eating, how does this apply to drinks (soda/tea at a restaurant or coffee at Starbucks)? Would you avoid these as well? At times when I know I can't eat something when I'm out with friends, I will just order a drink, but is that okay (for this time period while I'm being strict)?

[Scott Adams]

This may be helpful: